Caring for adult children with disabilities

A pilot study of parents’ perceptions and experiences

Abstract

https://doi.org/10.21860/j.14.1.2

Parental care for an adult child with disabilities presents exceptional demands and responsibilities that can have a negative effect on the physical and psychological functioning of the parents. At the same time, because of the cumulative impact of stress and the growing concern for the uncertain future of their aging children, the workload of parent caregivers who care for older children is higher than those who care for younger ones. Because comprehensive care for adult children with disabilities presents a significant psychophysical challenge for the health of elderly parents, and also considering the research results that point to the importance of their surrounding’s support, the aim of this research was to gain initial insight into the issue of caring for adult children/people with disability within the framework of the public and private sectors in the Republic of Croatia, from the perspective of the parent caregivers. 72 parents (67 women) that fully care for their adult child with disabilities, with an average age of around 53, partook in this research. The data was collected online. The thematic analysis of the responses to the basic research question indicates that a smaller percentage of parents express overall satisfaction with the care, while the majority of parents cite reasons for their dissatisfaction with the care that their children as people with disability receive. Preliminary insight into the aspects of formal care for people with disability, from the parental perspective, has given a scientific contribution in the form of empirical guidelines for future research on this topic. Additionally, the conclusions can contribute to the development of bioethical scientific professional discourse and, congruously, to the analysis and evaluation of existing social policies.